By Tom Belger, Social Affairs Reporter, Liverpool Echo, 11 March 2018.
‘He just wants to be with his mum – I'm so full of guilt. I'm supposed to be his mum and I can’t even see him'
A young mum feels like “living death” because of a debilitating brain condition that means she can only see her son for a few minutes a day.
Bed-bound Sophie Cooklynn, 21, from Bootle, said it was heartbreaking that severe ME had made her toddler Lucas' touch and voice too painful to tolerate.
She is forced to wear dark glasses and earplugs and struggles to move her body at all, as it triggers pain “like you've been poisoned”.
She decided to speak out about the reality of her condition as she said some people saw her as “lazy” and failed to understand ME.
The complex disease is reported to affect around 250,000 people in the UK – and can be mild or extremely serious in its wide-ranging symptoms.
Former photographer Sophie said only a few a years ago, she had felt fit and healthy and hoped to launch her own pet portrait business.
She and fiancé Philip Clark met while walking their dogs in a park – and hoped to get married in 2020 after the birth of their son.
But she said she was now “stuck in a dark room all the time” and now relied on ex-army tank driver Philip to feed, wash and do everything for her, as well as Lucas.
Their wedding plans have been put on hold and the couple said they had lost touch with people close to them who failed to understand Sophie's condition.
Sophie told the ECHO: “It's a real disease. But people don't believe you – even people close to you.
“I lost nearly everybody. People say you need to see a psychologist, or say you are not trying to get better. But I push myself so much for the sake of my son.
“ME is inflammation of the brain and spinal cord. It affects everything.
“I'm not living – I'm completely bed-bound and I'm in tears lots of the time. It's like living death.
“I get pain all over and have to wear dark sunglasses or a blindfold and earplugs all the time – and can't be touched.
“Lots of the time, I can't tolerate my son being in the room. He doesn't understand he has to be quiet as it causes a lot of pain in my head.
“But he just wants to be with his mum – I'm so full of guilt. I'm supposed to be his mum and I can't even see him.
“I can't lift myself at all. I can't leave my bed or even go downstairs anymore. The only time I was going out was to see the doctor, but now I can't even do that.”
She said one of her only brief respites was spending about five minutes chatting online to other ME sufferers.
Sophie added: “I've lost my dignity – my bathroom is my bedroom as I have a commode. I have to be washed in bed.”
Philip, 39, from Ainsdale, said he now washed, cared for and fed Sophie every day, as she could barely lift her arms.
He said it had previously been Sophie who helped him at home, as a back injury while serving in the army had left him disabled.
He said: “I never thought I'd be in this position – disabled and looking after my partner who is 1,000 times worse than I am. I suffer pain a lot but she has said it's like a nest of bees in her brain.
“It's absolutely disgusting with this disease that people think she's just being lazy, or needs a kick up the a**. I can't believe it.”
The couple's life changed radically during Sophie's pregnancy, when she first started to notice symptoms.
Sophie said: “My pregnancy was really bad, worse than other people I knew. I was really nauseous and flu-y and seriously exhausted all the time.
“I had quite a lot of time going between doctors. They tried to blame it on the fact I had given birth. But, after that, it didn't get better.
“I would collapse on the floor and not be able to move. I was sleeping a lot – even my son crying didn't wake me up.
“I had to drop out of college as I couldn't concentrate. I didn't get my chance to be independent.”
She was diagnosed a year after giving birth in October 2017 – and said things had continued to deteriorate.
But she said she had not given up on life, with her son and fiancé keeping her going.
She added: “It’s scary but I want people with severe ME to know they are not alone.”
Charles Shepherd, a medical adviser at the ME Association, said:
“Despite being recognised by the World Health Organisation as a neurological disease, many doctors still don't know how to diagnose and manage ME/CFS, and lack of research means that we still don't have any effective forms of treatment.
“This is a completely unacceptable situation for a disease that is twice as common as multiple sclerosis and where a new report has estimated that it is costing the UK economy around £3.5bn in lost taxes, healthcare and benefit costs.
“We need to do more to help people like Sophie, who is being denied the most simple right – to spend time with her son.”
He said symptoms of ME included exercise-induced muscle fatigue, exhaustion long after exerting yourself, memory and attention problems, sensitivity to light and sound, pain, faintness and flu-like symptoms.
ME Association note:
Sophie was one of the many people severely affected by M.E. or their carers, who kindly responded to our recent appeal for case studies. We have kept everyone's name on file and will continue to try and get more of your stories featured in the general media whenever we can.